2010: I Survived!

Happy New Years everybody!  New Years has always been a special time for me.  It symbolizes the chance to wipe the slate clean and start anew.  2010 is a year I have been looking forward to finishing for a while now.  In retrospect, I think it has been one of the worst years of my life as well as my family’s for several reasons that I don’t want to get into.  One big reason that you all know about is my illness and the turn it took for the worst this past year.  I can honestly say I feel like I’ve been to hell and am just now starting to find my way back.  However, through it all I have come to realize the great strength present in myself, and my family and friends.  In the coming year I hope for better health and more good days than bad.  

In the spirit of New Years I have traditionally made New Year’s resolutions, however, they often get forgotten as time goes by.  This year I decided to do something different in an effort to be more concrete.  After facing a year of so much uncertainty, I want guarantees.  Therefore, I decided that rather than make a list of things I aim to do, I am going to make a list of things I will never do – for reasons like my illness, my personality, and my lifestyle.  In making this list I aim to accept the things that I cannot change and make room for the things that I will do this coming year.  Here it goes…

Marah’s Never List:

-       I will never be a world traveler.

-       I will never like sports.

-       I will never climb a treacherous mountain (Maybe a hill at some point?).

-       I will never eat copious amounts of sugar.

-       I will never ride in a hot air balloon.

-       I will never eat meat.

-       I will never lose myself in a relationship. (Make that never again…)

-       I will never turn my back on my family and friends.

-       I will never stop trying new things (I know that’s a double-negative you English enthusiasts, but this is a “never” list).

-       I will never get shit-faced drunk.

-       I will never like winter (as much as I really wish I did).

-       I will never go fishing (no offense Dad).

-       I will never be good with directions.

-       I will never have an interest in knowing how machines work.  I’m just glad they do.

-       I will never have good hand-eye coordination.

-       I will never take the small things for granted.

-       I will never impose my beliefs on someone else.

-       I will never give up on myself.
 

Looking back at this list, I feel a bit of weight lifted off of my shoulders.  These things that I will never do are now cast out into the universe for someone else to try.  I am who I am and I’ve been dealt the cards I’ve been dealt.  And so be it. 

Some questions to consider:

What would you write on your never list?

Can you think of anything else I should add to my list?

Happy Holidays!

Happy holidays everyone!  This year I decided to send out a holiday card (actually e-mail) to my friends and family with a bit of a chronic fatigue syndrome flare.  Check it out: 

Dear Family and Friends,

Happy Holidays!  This year, I have watched the holiday cards flood into our mailbox with smiling faces and kind greetings.  In the spirit of the season, I wanted to make a holiday card of my own, but with a bit of a twist.  This year has been anything but typical for me and I feel the need to update the people I love about it.  If this were any other year, you might be getting a holiday card from my family (emphasis on might because sometimes they just don’t happen) sharing my accomplishments like making the honor roll or taking a great vacation.  Unfortunately, this year my accomplishments have been of a very different kind.  They have included things like finding a medication to stop me from fainting several times a day and getting strong enough to stop using a wheelchair.  Perhaps I should start from the beginning.

It all began in my freshman year of high school, a time of transition and major stress. Suddenly, my body was overcome with a heavy malaise and my muscles were constantly strained. Told by my doctors that the teenage years were a time when the body experiences "major changes", I thought little of it. However, not long after the onset of the fatigue, I began getting sick more frequently than normal.  In the beginning, I was diagnosed with Hashimoto's thyroiditis, a hypo-thyroid disorder, when it was discovered that my thyroid was profoundly enlarged. I thought that this diagnosis and treatment would represent the end to my suffering and was hopeful that my energy would return soon. Unfortunately, that was not the case.

Fast forward to present day, I now know that I suffer from chronic fatigue syndrome and fibromyalgia. I have experienced many ups and downs in my symptoms over the years, which vary from fatigued but functional, to bedridden. I have been fortunate to have reprieves long enough to allow me to attend college and live away from home. Unfortunately, I am currently in my senior year, but have had to take a medical leave for the semester due to a major flare up.

While I do plan to return to college this upcoming semester, chronic fatigue syndrome and fibromyalgia are chronic conditions that I will have to contend with for the rest of my life.  While my symptoms can be somewhat managed, there is always a threat that I will have another flare up like I did this year that will leave me unable to function and take care of myself.  However, there is some hope.  On October 8, 2009, a report was printed in the journal Science citing a possibility that chronic fatigue syndrome is caused by a HIV-like retrovirus called XMRV. Motivated by this discovery, scientists are working diligently to devise better treatments for people with my condition.

I have decided that I can no longer sit around and wait for a cure to come along for me.  I want to be part of the solution.  For five months I have been homebound.  I have felt hopeless, helpless, and my faith has been tested.  Knowing that there is a test available that might explain why I have suffered the way I have provides me with a glimmer of hope; but the fact that there is no treatment leaves me in a bad place.

This holiday it is my wish to raise money for the Whittemore Peterson Institute for Neuro Immune Disease, the facility that discovered XMRV and is driving research and treatment efforts.  I know that the economy is horrible and that everyone just had to shop for the holidays, but like many social issues of our day, beyond generating awareness, the only way to fuel action is through donations.  Up to 10 million U.S. citizens could already be infected by XMRV and our blood supply is contaminated. 

Below is a button that you can press to donate through PayPal using your credit card. Thank you so much for all of your support.  Have a wonderful holiday season and a happy new year.

Happy Holidays,

Marah


Like I did with my family and friends, I challenge you to make a donation!  Press the button below...

An Invisible Illness

With the cold weather kicking in, I have been spending a lot of time curled up with good books to keep me company.  This morning, I finished a wonderfully, heart-warming memoir entitled Look Me in the Eye by John Elder Robison.  The book details Robison’s life with Asberger’s and the trials and tribulations he faces as he makes his way through the world.  Towards the end of the book Robison discusses how his disability is received, noting that his condition is often misunderstood due to its invisible nature:

“A person with an obvious disability – for example, someone in a wheelchair – is treated compassionately because his handicapped is obvious.  No one turns to a guy in a wheelchair and says, ‘Quick! Let’s run across the street!’  And when he can’t run across the street, no one says, ‘What’s his problem?’  They offer to help him across the street’ (Elder 2008).

While I do not have Asberger’s, Robison’s comment resonates with me because my illness is not visible to the outside world either.  In some ways, I am grateful for this invisibility as I do not face the judgment and prejudices that many people with physical handicaps are subject too.  I also get to choose who I tell about my disability and don’t have to wear it around. However, the invisibility also presents a lot of room for misunderstanding. I often fear that missing school, having to cancel plans and miss events, and sleeping a lot more that the average might make me appear lazy or unreliable. In addition, many people don’t understand the extent of my illness because it is hard for them to believe that someone could be that sick when they look fine.  Recently, I lost about 15 lbs. due to stomach issues and people often compliment me on how great I look when really it is because I wasn’t digesting my food properly and was in severe pain.  The truth is I’d rather be fatter and feel better!

The other issue with “looking fine” is that it is up to me to ask for help because it is not offered.  I am a proud person and I have a hard time accepting my limitations. I hate feeling dependent on other people and don’t like being taken care of.  While sometimes I’d like to pretend that I am normal and embrace the invisibility, I know that I am better off when I swallow my pride and allow people to help me.  In the past I have ended up making my self sicker by pushing myself too hard when I should have asked for help.

In many of these articles a theme I keep returning to is control. I often feel resentful that I lack control over my symptoms and the limitations they impose on my life.  However, I have to find control in other areas.  When it comes to the invisibility factor of chronic fatigue syndrome and fibromyalgia, I do have control over how I make my invisible illness visible and to what extent.  Writing this blog is a big way that I choose to make my illness visible. In a way this blog is a kind of “coming out” for me that allows me to take ownership of my illness and find the positive in the lessons I have learned from living with my disability.  In the end, it’s all about balance.  I don’t want to hide my illness but I don’t want it to define me either.  By finding outlets like this blog and asking for help once in awhile, I hope to make my illness visible in a way that does not place a burden on others and helps me to be better understood.

Some questions to consider:

How do you tell people about your illness?

How do you cope with your limitations?

How do you ask for help?

Vote for MCWPA's Ad Campaign for the Washington Post

As a CFS and FM patient who has struggled for years for answers within the medical community, I am always on the lookout for ways to support research and raise awareness of these illnesses.  Recently, the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient group, has been working on an ad campaign to run in the Washington Post.  The goal of the ad campaign is to encourage reporters to do a story the will delve further into the experience of CFS patients and generate awareness within the general population.  For years patients have not received the care they deserve due to lack of funding for research and a lack of public awareness about this problem.  MCWPA is sending the message that addressing the needs of patients is the responsibility of society, not just the patients themselves. 

Get involved!  MCWPA has designed 4 different ads and is allowing the public to decide which one will run in the Washington Post.  Cast your vote at http://mcwpa.org/2010/11/ads-ready-for-final-vote/.  Voting ends on Monday, November 29 at midnight EST.

That's So Cliché...

The other day I was feeling a bit desperate which led me to write a list of motivational words to cheer myself up.  As it turns out, it did the trick so I thought I’d share it with all of you:

Be patient.

Things will get better.

Time heals all wounds.

All is not lost.

Family and friends aren’t going anywhere.

Seek gradual improvements.

Be good to yourself.

Breathe.

Find comfort in small things.

Listen to your body.

Get a second wind (or third or fourth…).

Start small and grow.

You are not your illness.

Strategize, make plans, set goals.

Stay in the present.

Don’t compare yourself to others.

Never give up.

Stop feeling guilty.

Stop judging yourself.

Love yourself.

Give yourself some credit.

Be proud of your accomplishments.

Pamper yourself.

Nurture yourself.

Learn to let go.

Don’t sweat the small stuff.

Be appreciative.

Rise to the occasion.

Conquer your fears.

Relax.

What Goes Down, Must Come Back Up

Lately, I’ve been doing a lot of reflection on my life and its most recent events.  Looking back, this has been a year of great loss.  I have lost many of my abilities due to my health issues, and as a result, I have lost my sense of confidence and direction in life.  At the beginning of this year, I was dealing with chronic fatigue syndrome and fibromyalgia but it was very manageable and did not stop me from being in school, having a boyfriend, and keeping up with my friends.  Now, I am at home where I only have one friend, have been dumped, and have the hobbies and activity level of someone in their 70’s rather than someone in their 20’s.  I sleep the majority of the day, knit, and have even taken up watching Jeopardy and Wheel of Fortune every night with my parents.  In addition, I have had two very traumatic trips to the hospital due to fainting spells.  I’m hoping to go back to school for next semester but nothing with me is ever certain.  So where do I go from here?

Well, what I’ve concluded is that the only direction is up.  I have been thoroughly cast scanned and MRIed (yes, these are verbs in my book) and it has been concluded by several members of the medical community that I am not dying.  This fact alone eliminates any further surprises.  Other than that, I know for certain that my friends (though they may be long distance) and my family aren’t going anywhere.  While I don’t do much every day and I don’t have much of a direction, I’ve learned to believe this is only temporary.  And as far as my health is concerned, I have a new doctor and am going to defer to his suggestions.  All I can do in the meantime is focus on minimizing my anxiety and stress level.  I can’t predict the future and trying to only leads to fear. 

I guess what I’m really trying to say is that I need to live in the present and take each day as it comes.  When I feel sad, I will let myself feel sad.  When I feel tired, I will sleep.  And when I am in pain, well … they actually make pills for that!  And while at times this seems like a pretty pointless existence, it is only a temporary state. Though gradual, I do see improvements in my health and I know from past experience that my illnesses tend to peak and plateau.  If nothing else, I am living to see this thing through and find out what the future holds.  I do believe that there must be some purpose to all this suffering and that whatever/whoever is out there (g-d or whatever you believe in) isn’t just being cruel and making an example out of me for no reason.  I might hold the key to some answers or at least be able to guide someone else through a similar experience someday, who knows?

Questions to Consider:

What keeps you sane?

How do you deal with times when you are homebound?

How do you confront loss?

Elimination Diet

About 4 years ago, I began to experience very troubling acid reflux.  Taking the traditional route I saw a GI doctor and had an endoscopy.  The test came back showing mild irritation so I was tried on several different proton pump inhibitors but got no relief.  The only thing that seemed to help was TUMS, which I began taking several times a day.  About 2 years later I started seeing a new doctor who put me on Aciphex, a proton pump inhibitor I had not tried before, and told me that I had a large list of food allergies (corn, cow’s milk, tomatoes, yeast, and all red, blue, and purple fruits).  I felt some relief but not completely so I continued with the TUMS and continued to deal with the discomfort as best I could. 

My symptoms were manageable until March of this year when I went to the emergency room with stomach pain so severe that I thought my appendix was bursting.  I was evaluated and sent home with a week’s worth of pain medication.  I was told to follow up with a GI doctor if my symptoms did not resolve by then.  After a week spent hugging my heating pad, I was out of pain medication and left with serious discomfort so off to a new GI for another endoscopy as well as a colonoscopy.  Both came back negative so I was given a diagnosis of IBS, the diagnosis you get when you have lower GI issues with no visible explanation.  I was put on every anti-spasmodic medication available but they did nothing.

As a result of this negative experience, I began seeing a chronic fatigue and fibromyalgia specialist who told me that the allergy test I had been give 2 years earlier was a scam and that I had avoided the list of foods for nothing.  At this point, I decided to take matters into my own hands.  I believed that if there were no visible abnormalities in my esophagus, stomach, colon, or intestines, then my problem must stem from what I put in my body.  Based on my own research and discussion with the new doctor, I decided to try an elimination diet. I went on Amazon.com and settled on the book “Dealing with Food Allergies” by Janice Vickerstaff Joneja (to look into it further or buy one for yourself, the link is available in "My Favorite Things" section). 

The diet begins with 10 days of the “few-foods elimination diet” which includes a small (emphasis on small) list of food that do not cause allergies in the majority of the population.  This was not easy.  By the end of the 10 days I would sit and watch people eat because I was feeling so deprived.  The next phase of the diet is called the “challenge phase” in which food groups are reintroduced sequentially.  I am still working on this phase but so far I have discovered that I have sensitivity to egg yolks, uncooked tomatoes, cauliflower, and sugar in large amounts.  I have still not reintroduced dairy, wheat, yeast, and alcohol (except for vodka in honor of my 21^st birthday). 

The results?  The feelings of starvation and deprivation were totally worth it.  I am not completely symptom-free but my upper and lower GI issues are the most controlled they have been since they began.  If anyone out there is struggling with chronic fatigue syndrome or fibromyalgia and GI issues I would definitely recommend looking into food allergies and trying an elimination diet.